For parents of children with disabilities, it can be difficult to understand how to access services and supports. The book “What No One Tells You About Parenting a Child with a Disability” is a roadmap that provides guidance, stories, and support for parents about diagnosis, school, insurance, disability rights, and parenting.
Author Kelly Coleman talks about the book with Here & Now’s Deepa Fernandes.
Excerpt from the book: “Everything No One Told You About Parenting Children with Disabilities.”
kelly coleman
introduction
The cover of “What No One Tells You About Parenting a Child with a Disability.” (courtesy)
welcome. You never expected to come here, did you? If you’re reading this, you’re probably the parent of a child with a disability, and you’re probably feeling overwhelmed, exhausted, and confused by everything going on. What is that straight path you thought you were on? Yes, you are now on a different path. The old road no longer exists. same here. you are not alone. You love your child more than anything in the world. But what about the documents? Not so much…
From my own experience of raising two children, one of whom has multiple disabilities, I have learned that no one knows how to do this. When we find ourselves in the middle of it, we reinvent the whole wheel. every. single. time. At the beginning of this journey, you’ll find that the best place to get real, practical information is often from other parents. And we become informed parents. Finally. This book is a roadmap to becoming that kind of parent. Be the parent who understands it, follows through with it, and celebrates your child’s hard work in the process. Whether you’re raising a newly diagnosed infant or have been caring for adult children for years, this book is for you.
I wish there was a magic solution that worked for everyone, but every region, family, child, and disability is so different. We have a system in place. However, these systems often present one headache after another. They may feel it is impossible. I wish they were created and run by the people they serve.
This book contains what worked for me. Many of them will be useful for you. If what I say doesn’t resonate with you, please feel free to ignore it. Even with the same federal guidelines, systems, services, and supports vary widely from state to state. And our children are even more unique. Disabilities are viewed differently in each family. Of course. Each child’s development and growth is different. And depending on your child’s path, he or she will never be more or less than someone else. A friend of mine is currently planning a college trip for her child who is graduating from high school with honors. Another friend of mine spent most of the past year in a hospital room with her child, staying in the hospital for multiple surgeries and months for pain management. Both families have experienced living with a child with a disability, but those experiences clearly impact their lives differently, even if they are great parents who passionately love their children. My friend Jill recently expressed this situation: “We’re all in the same ocean, but in very different ships.” There are days when I don’t know which boat I’ll be on. They are all floating. Some are difficult to paddle.
And paddling for me looks different than paddling for you. What does that mean? It means that we all bring our own life experiences to parenting and how we navigate the oceans. On top of that, there are very real prejudices that many families face, and this is not only prejudice against people with disabilities, but also prejudice based on race, education, income, and many other factors. Stigma often impacts your ability to access the support and services you need. For example, a 2021 report from the California Department of Developmental Services shows that Latino clients receive an average of 41 cents in regional center funds for every dollar spent with white clients. It has been. The U.S. Department of Education’s Office of Special Education and Rehabilitation Services states on its website: “Black or African American students with disabilities are more likely to be considered intellectually or emotionally disabled and more likely to be subject to disciplinary dismissal than all students with disabilities.” than students. ” In a conversation with LisaMosko Barros, executive director and founder of SpEducational, she said that evaluators often attribute learning disabilities to the child’s culture or the language spoken at home, rather than the actual disability. He mentioned his own clients whose disorders were left undiagnosed and unaddressed because they incorrectly assumed they were. hindrance. Mosko-Barros also spoke of the privilege of living within the confines of a well-resourced school that can afford independent evaluations, second opinions, additional treatments, and lawyers. She admits that sometimes families can understand this, but admits it can be difficult. “If you don’t have an education, you need time,” she said. “And time is a privilege.” In my own family, I’ve seen the privilege of time work to the child’s advantage. I was able to take the time to learn, understand and make things happen so that my child got the support he needed. In addition, I acknowledge that I have other privileges, including race, education, income security, and a supportive network of friends and family. And all this is still really difficult for me. Every day is hard. Is it difficult to love your child? No, never. But is this much paperwork necessary? Yeah, it sucks. My purpose with this book is to save others a lot of the time, money, and stress that I spent learning this stuff. I want to provide others with information they can use to support their children and combat the stigma they may face along the way. We are not all in the same position. Let’s help each other row. For all our children.
This book does not provide one perfect solution. Obstacles are not problems that can be solved. The problem we need to solve is the lack of adequate and accessible support. For everyone. I am neither a doctor nor a lawyer, and this book is not intended as medical or legal advice. This is a guide to the basics so your child can ask better questions, get better answers, and find better solutions so that they can be as involved as possible in the decisions that affect their lives. This book is what you need on the map of your new life, consider yourself here. Where you go from here is up to you. My child has a rare, undiagnosed genetic syndrome. Perhaps our children are very different and also have many similarities. Just like all of us parents. As a fellow parent, you don’t know what your child needs. But I know what you need. It’s information you can understand and use. I’m not here to help your child. are here to help you
Excerpted with permission of the publisher.
This segment was broadcast on October 16, 2024.
